I find that many of my friends remember the specific date upon which their child was diagnosed with autism. Many dread its anniversary, girding themselves for the PTSD that, to them, feels inevitable.

I often hear those same parents refer to that day as D Day. Or The Day That Changed Everything. And every time I hear it, I bite my tongue. BecauseI remember.

I remember the cold, industrial tiles of the bathroom floor. I remember heaving over the porcelain toilet, holding tight to its sides to keep myself from – from what? From being swallowed whole by my anger– at Luau, at myself – and my grief – for my girl – and my abject terror – because I didn’t yet know that in years to come when I heard people refer to that day as The Day That Changed Everything, I would have the same thought each and every time.

Everything?

Really?

What about your child?

Because I know now that mine was – and is – exactly the same.

She was – thank God – the same delicious, beautiful, creative, funny, generous, loving, quick-as-a-whip brilliant, and yes, torturously challenged little girl the moment after her diagnosis as she was the moment before.

Nothing – absolutely nothing – about her changed that day.

It wasn’t until years later when Brooke’s initial diagnosis was being changed from Autistic Disorder (also commonly called Classic Autism) to PDD-NOS that our beloved neuropsych, Dr Dreamy would look at me and say, ‘I’m a little surprised that you don’t seem particularly moved by the change in diagnosis. Many parents, whether appropriately or not, tend to think of PDD-NOS as a ‘downgrade’ from Autistic Disorder.”

And it would be all those years later that I would hear myself say by way of a response, “I don’t really give a crap what you call it, Dreamy. Call it Henry for all I care. I’m still going to call my precious girl Brooke when we go home tonight.”

But I’d be lying if I said that nothing changes on the day that you are told that your child is autistic. Things DO change. And you want to know what changes most profoundly? You.

You change because on that day, you are handed a key.

A key to understanding, compassion, community (for you and more importantly, for your child). A key to becoming a better parent, a better friend, a better citizen – a better person.

And, most important in that moment, you are handed the key to the tool box containing the tools you will need to help your child.

Years ago, when I was still walking around in the shocking pink haze of denial, I remember saying something particularly absurd to a friend. Actually, I think I said it to a lot of friends, because my version of denial – the shocking pink hazy kind – requires lots and lots of loud, enthusiastic repetition.

But one friend in particular brought it up to me recently. She even told me that her husband had asked her at the time, “Um, do you think we should tell her?” and that she had said, “No, she needs to get there on her own.” She knew me well enough to know that I would.

What I had said was something along the lines of the following:

“You know, it’s just the darndest thing. You see, we got this totally outlandish preliminary diagnosis of autism. Gawd, that womanwas an ass. I mean, it couldn’t be any more obvious that my kiddo does NOT have autism.”

I’m pretty sure this was the point at which I rolled my eyes like a teenager telling her friends that she can’t go to Key West because her mom is making her spend spring break with her grandparents. Can you Uh-Maj-In?

“But,” I went on, bright and sharp and chipper in my happy little pink bubble, ‘they DID give us some strategies that are used to teach people who DO have autism (read – anyone but my kid who clearly doesn’t have autism. Oh, and don’t mind her stimming over there in the corner, she’s just, well, ya know, obsessively looking for spider webs cause that’s what she does everywhere we go and I have no idea what the hell to do about it or how to even get her to look up when I call her name and Oh My God, I feel so %@#&ing helpless and I don’t know what this is; I just know that isn’t the way that it’s supposed to and we’re both drowning) and man, those strategies they gave us are WORKING like nobody’s business!

So, to recap: Not touching the word with a ten foot pole, but Golly Gee Whiz, I sure am happy to have found the key to the tool box.

Nearly a year later when we finally managed to get in to Children’s Hospital for the ‘second opinion’ I had already accepted what I now knew was true.

If you’ve gotten to the point of having your child (or yourself) evaluated, there’s a reason. You might not be willing to face what that reason might be yet, but it’s there. Mine sure was, stimming softly in the corner, searching for cobwebs.

Autism is a word. And a word does not – can not – define nor predetermine a life, nor should anyone ever give it the power to limit one.

So when people say that on the day that they received their child’s diagnosis ‘everything changed,’ I say, “God I hope not.”

If we are parenting our children – any children – from a place of respect, over time our dreams for them will evolve as we find out who they are.

The father who wants nothing more for his infant son than to be a star quarterback might just find himself converting the attic into an art studio for the teenager who can’t throw a ball to save his life but paints like Monet.

The mother who dreams of picking out China with a daughter-in-law may just find herself planning a wedding for her son and soon to be son-in-law.

The mother who assumes her daughter will follow in her footsteps and attend her ivy covered alma mater may just find herself visiting her girl in her tiny flat in Paris where she’s chasing her passion for French cooking. Dreams evolve. They must.

But please – I’m begging you – don’t let your dreams for your children change the instant you hear the words, “Your child has autism.”

Let them evolve as you find out if he’s a quarterback, a painter, a poet, an inventor or a chemical engineer.

Watch her. Follow her lead. Be patient. She will show you her strengths. More slowly than you might have thought, but they will begin to unfold. Because EVERYONE has strengths. And when they emerge, encourage them. Foster them. Build new dreams around them. Together.

And if you’re facing that day – the day when it’s not unlikely that someone in a white coat will say those words that will send you reeling, please remember this – As much as things may feel different, they’re not.

Walk with the word for a while. Worry it in your hands, let it sink slowly into your heart. And know that as hard as it may be to take hold of it, do.

Because it holds the key.

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105 thoughts on “D Day”

We had a name, and if it could be named we could get help. The double-edged sword: as much as I didn’t want my child to *have autism*, it was also meant I just didn’t totally suck as a parent. It wasn’t something wrong with my parenting skills, but something really was wrong with my child. Relief and grief. I’d gladly take every parenting class in the world – blame me!!, but please don’t let there be something “wrong” with my child. With a DX however, we found HOPE, faith and courage. We found support, we found a community that cared and loved my son for who he was and who he could be, rather than just a community that blamed me for being a crappy parent.

I have PTSD in many situations, but never about D day; for us it meant answers – and finally help.

Beautifully put, Tina! We felt the same way. Our diagnosis came in fits and starts; first the medical diagnosis at just shy of three years old. The school diagnosis was the hard one…my boy was nearly seven then. In an odd way, we’re lucky he has other disabilities because it meant he was receiving therapies the whole time we fought for school services for autism. But I weep at the thought of the families who *know* there’s something there but who cannot get a name for it, a key to unlock so many doors, until there child is older.

You take the time to write and say what I don’t. Thanks for doing this.🙂

We came to autism sort of the opposite way… we came saying “I think she’s got autism/asperger’s” and having the docs say “well, we don’t think so, but here’s some tools to use (the ASD tools) that might help.”

LOL

Eventually we got the AS dx, and you are right, nothing changed that day. But oh my husband bawled. I am not going to say I was “happy” or even satisfied, but thankful, I guess, that some medical doctor actually saw what I did. I went thru so much stress those 5 years leading up to the official word. So many parenting books targeted at BAD KIDS. To finally know that this was something else, and be given the RIGHT tools to handle her. AND RAISE HER RIGHT. Because it was always more important to me that I *raise* this child, not “handle” her. But I was losing my mind trying to figure out if it was me messing up or what. The acknowledgement that I was on the right track, and “here’s some more help” was awesome.

And my daughter’s dx was instrumental in me seeing the problems in my son’s development. He was not-quite-typical either, and we were able to start therapies with him much earlier than we had with my oldest.

So, the official D Day, well it was welcome to me. A sigh of relief, so I could move on, and stay on, the right path.

Ha, that’s sort of where I am with my daughter minus the her actually getting diagnosed part. She has other medical issues, so getting an IEP was pretty easy. They included a bunch of therapies generally done with autisic/asperger’s kids, but she doesn’t have an official diagnosis. They want to wait and see how she does with intervention. Since she is getting the services she needs, I’m fine. If the lack of diagnosis was standing between her and help, I would be pushing for an actual diagnosis.

“I mean, it couldn’t be any more obvious that my kiddo does NOT have autism.” It’s kinda creepy how you were watching over my shoulder and recording all that, Jess!

“But,” I went on, bright and sharp and chipper in my happy little pink bubble, ‘they DID give us some strategies that are used to teach people who DO have autism (read – anyone but my kid who clearly doesn’t have autism. Oh, and don’t mind [him] stimming over there in the corner.”

Oh, yes, that was me **exactly.** Worse was a cluster of well-meaning professionals, speech and OT folks, who were just as anxious as I was to hang in the bubble and avoid that scary word. “Oh, we’re very sure he doesn’t have autism!,” they would say, after each of those many therapy sessions.

Well, he most certainly does. Which means everything and nothing. Everything in terms of how we search for ways to support him, and nothing in the face of his own wonderfulness.

I have many thoughts about this post ranging from, an accurate diagnosis is crucial if you are going to effectively address underlying issues and problems-ever the clinican I am. I also am remembering back to when Aidan received his initial diagnosis and was told, he met criteria for PDD-NOS, but was given ASD because you get more services with that diagnosis. I have found that subjectively does play a role even in the most standarized of places. And lastly, Aidan was given a diagnosis of auditory processing disorder just this past January, IMO his “true” diagnosis. What does it all mean? Life evolves and so do our kiddos. If anyone wants to know how I describe Aidan, I say he is delicious, cause he is. And THAT is something that never changes!

Dreams do evolve, but the spirit of those dreams is constant. The dream that mine could all find happiness is constant, but the path takes a new direction each day it would seem. It will take longer to get there, but we will get there, and that word, that seems to close so many doors, is actually one of many tools we will use on the journey. Thank you for this – it was sorely needed today. My youngest was asked to leave her program at the deaf-oral communication school she has been attending yesterday because her autism is too severe and they cannot get her to speak. The dream evolves – with speech and hand apraxias, we look to her Ipad to be her voice, though I still long to hear her speak.

I typed out a huge comment here, but decided to share in a different venue. I feel a post coming. Anyway, that you so much for sharing, Jess. As always, your words find a way into my heart that somehow validates my humanity, letting me know always that I am not alone. xoxo

Sigh, Jess – this post MUST be put directly UNDER your classic “Welcome to the club”
How on earth do you continually out-do yourself and by god “stop me in my tracks” with every POST! and lol sorry for shoutin.
love ya!
Coop’s mum – Kris

I purposely don’t remember the exact date we got the diagnosis, just that it was late March. I remember telling my wife that whatever they tell us (which we both knew what they were going to tell us) he is the same sweet little boy. Very nice post, brings back a lot of memories.

I am still in my pink haze. Four years of Denial, Diagnoses, Doctors. Now that I have a name, a key to understanding, access to programs unavailable without a billable diagnosis, I keep reminding myself. My son has not changed. He is still the beautiful, wonderful, often difficult to work with blessing that he was last week, last month, last year. Putting the diagnosis on the chart didn’t change my child. Thank you (and other wonderful moms in the Blog world) who are helping me to walk this journey.

That was the most brilliant piece of writing for autistic parents- thank you, thank you. You help keep me connected every day, and that little reminder of “you are not alone” gives me strength and makes me a better person, parent than I was before.

I don’t remember the date, I remember the moment. I was alone, save for the white coats. “80% likelihood of Asperger Syndrome”…”diagnosis of Autism”. No oxygen in the room. Telling myself to nod quietly even though I couldn’t hear a word they were saying. I fought for that diagnosis. After the denial but before the diagnosis, I fought for a label. I needed a name. But only bc I needed a starting point, a direction to start heading. And even still, it was devastating. I think I was hoping I’d been wrong.

I, too, have finally gotten to a place on the path where the name is not important. I work on teaching him based on how well I know him, not by his exact label. This is a good place on the path. It took me a while to get here. I’m still moving forward though, bc there is still some hurt here. I know with true acceptance it shouldn’t hurt THIS much. But I’m working on changing that. My boy is still the same, though. He’s brilliant and perfect and unassuming and honest. He’s learning new skills but he’s still the same boy, thank God.

This is my favorite post ever, by the way. Thanks for looking at yourself so intently. Your insight into yourself helps so many others.

The only thing our “d-day” changed was to give us something official. Something to tell insurance and the school district, so that he’d get more services covered. “The diagnosis” did not, and will not, ever change who my son is.

I had my fair share of denial…but after playing with it, trying it on, and getting comfortable, I faced it, and my son has been in therapy ever since.

I don’t recall the date. I recall telling everyone that if I had to dance with the devil, I might as well know it’s name. If that dance helps me to unlock the wonderful child that I KNOW is stuck inside this amazing person that is my son…that’s fine. Call it whatever you want doc, just gimmie the key so I can get on with it!
.

No tissue warning Jess..>>GOD!!! You are SO right.
i knew by the time we got the diagnosis, that that’s what we were facing. My denial happened long before I ever took her to be evaluated.
And I am overwhelmed at how much I have changed, grown, evolved. But Cymbie? Yes, she is exactly the same….only now she is starting to really talk. and she’s potty trained. And she’s learning to write her name. And she can put her coat on by herself……
not only was it the key for me, but it unlocked her potential in a way I never thought possible.
November 9, 2010.

I don’t remember an exact day. We got a dx at 3 from our ped, then a dx at 5 from a dev ped/school, then a change of dx last year from a neurologist. I knew from the time K was 2 weeks old something was “off”, and even at 3, when the dr wrote a letter to the school saying K had pddnos, I think I felt more relief than anything else. I think I also felt relief at the pddnos b/c it wasn’t “classic autism”. Then we saw a neurologist who changed it to classic autism. That was maybe the harder pill to swallow. With the pddnos I felt like we had a better chance at a more normal life, eventually (in my head, only b/c of the diagnosis, not bc of how K behaved…clearly the letters don’t actually make a difference, but I told myself they did)…but the neuro watched K and was like, yeah, she has all the classic signs, even though she is higher functioning now (wasn’t at the beginning. The kid didn’t really speak til 4). I think I went through my grieving early on…just seeing her between 12-18 mo being not at all like the other kids in playgroup. Having moms comment to me about how K didn’t even parallel play. How all the little girls were singing full on songs at 18 months, and my kid didn’t even have single words. I cried a lot back then, and during the EI years. Now I struggle with looking ahead…although I just try to live day to day and as normally as I can…it’s hard (especially lately).

“Best of Diary”. I totally agree.
December 2009. Then again August, 2011. MY world changed. I became a more informed, more tolerant, less judgmental, more understanding mother. I have new plans for our life as a family and new hopes and dreams for them. Most importantly, that dream is that THEY find their way in their time and on their terms. It’s people like you that shows me I had that key to unlock this whole new world.

Dont remember the exact date but I remember the extensive interview and evaluation happening in the couple of weeks before Christmas. I believe we got our diagnosis on that second day. OUR diagnosis because it indeed intimately involves the whole family.

I felt relief. The stress of denial was instantly lifted off my chest. We indeed received a key that day. I thought that I cling to life on is the thought that my little boy is still exactly the same little boy. Autism did not change who he was and is. What has changed is only the way in which we understand him.

Our first date for an evaluation for my son came and went. I cancelled at the last moment, mostly because I was terrified of him being “labeled”. Then, as time went on, he started losing services because we had no diagnosis. It was clear as time pasted that this was “not about me” anymore and I had to do whatever I could do get my beautiful, loving, awesome son the services he needed. He was diagnosised with PDD-NOS at 3 1/2 and to be honest, I do not remember the exact date because I already KNEW way before that faithful day.

For us the report was 38 pages long and really outrageous in some the statements (lack of sense of humor — she makes up her own, very witty jokes) but it was a way to hopefully get her the help in school that she needed. Another doc said, “I don’t know that I would call it Asperger’s, but if I did I would call it “Asperger’s lite”.” We found this humorous and comforting, but it still didn’t change what we needed to do and thankfully all the “experts” we have dealt with recognized this. Four years later and almost 11 y/o, she still struggles with herself, she knows she is different in some ways and it still bothers her — this is her own biggest struggle. Life is still very frustrating for me because I can only help her but so much.

Thank you Jess for putting yourself and your family out here for all of the rest of us to relate to.

How did you know that I (and my husband) needed to read this exactly today?

April 1 will be the three year anniversary of our first eval, and I’m embarrassed to say that we’re still waiting for someone to say, “April Fools!” We fought for a more vague diagnosis, and that’s where it stands today. And yes, he receives services as if he has an official PDD diagnosis, but we’ve avoided it thus far.

Yesterday at a check-in meeting (scheduled because there’s been some regression after a half-year of great progress) the school psychologist brought the CARS checklist. I told her to go ahead and do it, then my husband could think about next steps.

Three plus years into this and the whole thing still scares me. I’m not embarrassed by my boy, I love him exactly as he is, but I am worried, even terrified about what the future holds.

Hekeri, such a brave thing to put out there…your truth. It is not an easy pill to swallow, that’s for sure. But I want to encourage you to look for the things which might become possible if your child has a clearer diagnosis, a diagnosis which might give the people that work with him —either now or in the future— a starting point so they don’t waste valuable time trying to figure out some things. And, truly, just the fact that he is alive means he will grow and change in ways NO ONE can predict. Give him the tools he needs to surprise you and make you even more proud of him. Hugs.

Thank you for this wonderful post. Our day came one year ago this month (surprisingly, I don’t remember the date). It was a little rough going into April last year as I was not ready to “Light It Up Blue” just yet. However, being the parent of a special needs child has changed my life (for the better) in more ways than I can count. I still cry and worry about both of my children’s future but I know with every cell in my body that something great is going to come from my girl.

Jess thank you for this. You are so right…the diagnosis the key to everything. Understanding, getting help…and realizing that we as parents can’t do this all on our own but we need a community of lovely folks to hold our hands and our child’s on this journey. Even though I pretty well knew in my heart of hearts 6 months before my “D day” I remember feeling like I was going through the steps of grieving for a month after. Anger, sadness, grief, feeling lost, helpless and then relief. I think sometimes we mourn the dreams we had for our child but need time to process everything and realize we are only getting to know our child and like you put it so well, we are getting to know all our children and learning what THEIR dreams and adapting to how to help them. Thank you for this incredible post.

I’m re-blogging on my blog and Facebook because others need to read this.

Three times I have read this post and each time I cannot stop the tears. It is one of those moments when I am both with you (and moved by what you are saying) and watching you (and moved by what you are doing). That combination always leaves me wanting to scream from my work desk – “Come over here and read this. Look at her go! She is my friend!”

This is beautiful and achingly true. I echo others comments that with my first, diagnosis was a bit of a relief as it answered so many questions. But then, 4 months later, the diagnosis of my sweet 20 mth old baby girl almost killed me. Down right took me out. It was too much. Too unfair. To all of us in our little family. I think my thunder is fading.

Could you link this post to “Welcome to the Club”? I think it would be a good read, to hear about the keys rather than the heavy locks (and heavy blanket of sorrow). I don’t know if I would have truly heard this last year, when I read “Welcome to the Club” but at least my heart would have heard it and reminded me when I was ready.

It’s only been a little over a month for us………fully engulfed in that pink haze………haven’t even really told my friends – I don’t even know what to say to them yet. I have barely even told the in-laws, but since they don’t see him, they don’t “get it”. Thank you! You are right – he is still the same cute little boy I took into the appointment.

Thank you for your wisdom and community – haven’t found anything other than online with you and a few other blogs, but soooo soooo helpful in knowing that I’m not alone. *Ü*

November 9, 2007. Yep, seared into my memory. I just looked the date up to see what else has occured on November 9. Considering my son’s affinity for all things music, it feels appropriate that 11/9/07 was also the 40th anniversary of the publication of the first issue of Rolling Stone magazine. I will never forget that day and the maelstrom of emotions. But now that we are on the other side of the dx, I do feel more competent as a parent, more compassionate as a human being, and even more confident in the amazing person my son will become! Thanks, Jess, for sharing this.

I’ve been following your blog for awhile now. It’s the only blog written by a NT parent that I do follow. And funnily enough I just wrote about the “day” for the Huffington Post – I’m including the link – http://www.huffingtonpost.com/ariane-zurcher/autism-awareness_b_1378828.html
That post is the beginning of a series I will be submitting featuring autists throughout the month of April. I am hoping their stories will receive a ground swell of support as these are the voices and lives that have changed my life and in so doing, my daughter’s.

Reblogged this on Everything Under the Sun and commented:
I want to share this incredibly moving blog post about “D Day” or diagnosis day when we as parents get confirmation that our child has Autism. Its a moving must read that puts these very heavy emotions into perspective. She’s right…the diagnosis IS the key:)

Sage advice as always, Jess! This is a special column; a must read for those in that dreaded shock of diagnosis stage, which can involve such grief. I hope this one gets posted somewhere where it gets seen. I wish I could have read this when I got the news so many years ago now.

So funny how we remember the date. Ours is October 6th, 2004. And, no, the label didn’t change who Jake was. And it did make me feel like I was less crazy, vindicated for all the times I had pointed out something was not “quite right” with him since he was an infant, while everyone had been patting me on the head & treating me like an overanxious new mother who just needed to relax. And it helped us get the services he needed, first from early intervention, then the school district.

But I would be lying to say there wasn’t some sadness there, too. A letting go of “it’s just a speech delay & he’s going to easily grow out of this soon” false optimism.

I’ve been reading your blog for a few months and I just wanted to tell you that you have helped me so much! My 3 year old daughter was diagnosed with autism in December. There is a sea of information out there and it is all so overwhelming. I don’t know where to look. Reading your blog makes me wish I wish I could call you and ask you all my questions because you really seem to be on the same page as me.

My favorite line from this post is, “I don’t really give a crap what you call it, Dreamy. Call it Henry for all I care. I’m still going to call my precious girl Brooke when we go home tonight.” After my daughter was diagnosed, the first speech therapist I talked to asked, “Were you surprised by the diagnosis?” I answered, “No. I knew that is what the doctor would say. At the same time, though, I don’t care what you call it. I just need help!”

Thank you so much for your stories. Your girls seem amazing. It is so nice to know that I’m not alone.

Amy, there are many of us who have been where you are now. And many that are more than happy to answer any questions you may have or to just be there should you want to talk and have someone listen. Please feel free to email me – ariane@arianezurcher.com – any time. There is another blog I just found – http://lifeandink.com/ – written by another mother who’s child is now an adult, she is very receptive of any questions you may have and is yet another person you might email if you felt like it, if for nothing else, support.
Sometimes knowing you have support and a community who care about you and your child can make all the difference.

This is beautiful and so spot on! I remember the day of the diagnosis clearly. The words the doctor spoke and how my son sat in the corner refusing to speak to anyone. I remember feeling numb.

But what I remember the most was going to lunch afterwards with my son and my sister and watching my son grinning from ear to ear because we got to go to Subway. And I remember him saying how much he loves pickles, and the worker gave him extra. And I remember just being so filled with love for my sweet, sweet son. And you’re right. The words that doctor spoke didn’t change him a bit. But they did change me for the better.

THIS. THIS is brilliant. You already know you are a talented writer and storyteller. These words, the emotion, the calm insistence to others not to ‘lose the way’…these are gifts not everyone is able to give. Thank you for giving. Thank you, thank you…

This can be said for any disorder. I remember my D day with my daughter. She has tourette’s syndrome. I was with MIL who is in denial about everything. I remember calling my husband at home and him crying on the phone becuase he was afraid our daughter would be called names due to her diagnosis it. i saw it as a relief. I finally had a name and after all these years every doctor we been to to explain the eye movements the vocal noises were wrong. He saw it as her being teased and made fun of. I thought ok know its this so now what can we do to make things easier for her. Now 3 years later and the tics are worse, the meds don’t help and my daughter has a tic that causes her to stop breathing and the doctors can’t do anything. ive seen the documentaries on this and knew it could happen so I was prepared. Same with my son and his Mood disorder NOS (drs say its bipolar disorder but too young to officially Dx) I know what it is now. It doesnt change how I think of my children. they are still the same funny goofy adorable children. Yeah my son’s moods and anger frustration levels change but now I know WHY. My son also has ADHD, ODD SPD and anxiety. Each with its own D day. Each with one step closer to finding the truth. I just wanted to know how I can help my children.

Columbus Day 2009….just me and my boy. Though I knew in my head,my heart had convinced me that maybe just maybe it wasn’t Autism. I drove straight to Toys R Us and told Cullen he could pick anything he wanted. My almost 3 year old who had hardly any single words. That’s how I was going to make this up to him,as though it were my fault.
What did he pick? A Wonder Pets Mega Block set..he is petrified by the Wonder Pets now..coincidence?😉

On our “D-Day”, we left the exam room and got into the hospital elevator with our beautiful boy. Our the way down to the parking garage, the elevator stopped, the doors opened, and right there in front of us was a HUGE sign on the opposite floor, telling us (more like screaming to us) that we were on the “Pediatric Oncology” floor. I looked at my husband and whispered, “isn’t that something? Isn’t that just amazing?” I know he wondered if I had lost my mind at that moment, but as I later explained to him, at that very moment it was as if some sort of divine intervention was telling us that “things could be worse…a lot worse…and that we still had our beautiful little boy, full of potential…and that we now had the key.” So, after allowing myself to rant, scream, cry, howl, mourn, i started using that damn key – I love that f#@&ing key! 🙂

Hi Jess,
I needed to hear this right now, because yesterday was the official D-Day for us. It had been a long time coming, and we knew that was the likely outcome, but yesterday it came in a FedEx envelope, flip to the 6th page, and there it is…Asperger’s. I’ve been reading your blog through Facebook since the summer, and find it so inspiring, with so much hitting so close to home. Thank you for helping me to find my toolbox to help my son. I’m so glad to have found this community to help me sort through my worries and emotions. You have no idea how much your posts have helped. Thank you.

Right now… I’m logging off to go play with my most beautiful blessing. I’m going to hug him, maybe shed a tear or two after reading this (without his knowledge), tell him how much I love him and let him teach me how to play whatever game is happening in his 4 1/2 year old Down Syndrome brain.

While we may have known at birth – it makes “D-day” no less relevant for us.

Thank you so much for sharing. I was going to start my new blog now (this morning) but it’ll have to wait until after our game. 🙂

And here I am almost a month later staring down the barrel of another “D-day”.

I realized this morning after re-reading this particular entry of yours that I responded the first time I read it. I had forgotten. I remember very well though the hugs, cuddles and giggles that came after writing that comment. And since then we’ve had so many more. Maybe that’s because you’ve helped me uncover something that was hiding under some very good camaflouge.

My little man has Down Syndrome. He’s 4 and a half. The years that he’s been here with us have been an amazingly beautiful, full of sugar, salt and spice roller coaster ride of laughter, tears, frustration and immense joy beyond words.

By stumbling across your blog (which is exactly how it happened), I opened up a world that will change my world once again. Because by reading about your world and then reading about the worlds of others in your community, I realized that my boy… (here come the tears) probably also has autism. I rang my family health care coordinator (my little man’s early intervention person who has been invaluable to me and has become one of my closest friends) and she has recently recognized the same things I have. Even Daddy said that he has been wondering. THAT – is a huge flag for me.

It was so easy to clothe his behavior in a blanket of Down Syndrome. It was so easy to say, “Oh, most kids with DS do the same thing”, knowing full well that this particular ‘ism’ is so far beyond what other kids do or have.

So now we delve into another gamut of testing with special specialists who have experience separating the ‘isms’ of DS and the ‘isms’ of autism to see if that’s really the case. I’m told the experience could take some time and could involve numerous visits to professional offices as well as home visits to monitor him in a familiar enviornment.

I want the keys to the tool box TODAY. I don’t want to wait. I want to let him out of this horrible box of non communication I see him in. It’s like looking at him strung up in one of those horrible plexiglass boxes that you see contortionists stuff themselves into. Hanging there in mid-air, begging me to let him out. “I haven’t got the key little man and I can’t even fit in there to hug you or hold you or stroke your hair. Do you hear me talking to you sweetheart? Do you hear in my voice how my heart oozes love all over you? Do you know what a beautiful miracle of life you are and how I would do anything I can in my power to preserve that miracle and make it the best life you could ever dream of living? I love you with everything I am precious boy. I will always be here for you no matter how hard it may get and with every laugh and giggle you have. You will always be mine and I will always be yours.”

You’re right Jess, he’s exactly the same. He’s gorgeous and yummy and beautiful and full of joy. I however, have already changed immensly because I know what ‘they’ are going to tell me.

I don’t think I knew all of that emotion was in there. Kind of sneaks up on you sometimes doesn’t it?

I appreciate your blog more than I can tell you. I appreciate that you KNOW what’s in my heart. More than anything, I appreciate the forum you’ve created that allows me (and others) to let someone, in a safe place, touch the raw place in my soul.

I remember the day my baby girl was diagnosed…yes it was something I will never forget….but it took me a while to absorb what I already knew and realized that take away the label…and she was still and always would be my little girl.

Amen! I don’t dwell on (or even remember, to be honest) the “official” dates of diagnosis. We came to it a little differently with each of our 2 sons. Yes, there was denial at first ( especially with the older one, who Drs. Said was ” too social, too funny” etc. to have autism – because I asked) even as we were getting so much help through EI. When it came down to finally hearing the “A word”, I was sad, of course, but also a little relieved that we now had more of a ” plan” and could work from there. My husband took it a lot harder ( loss of his “dreams” for both of his sons, I guess), but to his credit even as he was grieving he buckled down and jumped in with both feet. A word and a date didn’t change who my boys are. They are the same funny, smart, quirky, amazing (and ok, sometimes frustrating) boys they were the day before. Proper diagnosis just helped us work with them to achieve their potential – at every stage since then. And the support of the community, and the amazing ” autism friends” we’ve made probably saved my sanity ( or what’s left of it).

I like your description of letting your dreams evolve. But first people have to grieve the dreams they had and the child they expected. It took my husband and I both only a few days and we were ready to move on and get to work. I was also relieved to FINALLY have people to help me, to give me strategies for what was going on around me. Relief. I knew already that day. The night before I prayed “God please don’t let it be autism”. So I already knew it was. But it gave me a jumping board forward.

I love your posts Jess – I read this one a long time ago and I loved it just as much re-reading it today.
My journey with my son was a little different. His teachers at school had just mentioned just the possibility of autism when I was about 8 months pregnant with our daughter. I was devastated AND hormonal. Very hard to keep the tears contained while my son sat and drove toy cars past his eyes repeatedly.
I thought it must be the worst thing in the world. However, when my daughter was born with a chromosomal disorder and a plethora of serious health issues, I realized there are worse things. If nothing else, my son is healthy as an ox.
My kids each have their own challenges and they are both a handful in very different ways, but when my son got his diagnosis I was so relieved. I had known in my gut for a long time before then, even though no one else seemed to think anything was wrong, and confirmation was remarkably uneventful for me. My daughter’s diagnosis date? August 19th. I’ll never forget it. THAT was much more difficult to get through.

My boy is amazing and very unusual – he’s been diagnosed with both classic autism (“with some unusual abilities”) and PDD-NOS, depending on who you talk to. To me, it’s apples and apples. He’s definitely on the spectrum but he’s very unusual – he has great imagination and he’s very friendly (overly so, with no understanding of boundaries).

He’s also come leaps and bounds since then. When he got his first diagnosis he was 3 and only starting to put 2 words together in a sentence. He now yammers on 24/7, even if you can’t understand it all or some of it doesn’t make sense.

He’s super smart and while his anxiety and sensory issues are definitely a struggle, he is slowly learning to cope with therapies and school. I know he will excel in life, even if he’s never quite what people expect.

We knew…we had known for a long while. We were seeking the diagnosis so that we could begin to access services. But I still remember D-day. It did two things for me. 1. Sent me into an agonizing release of emotion on the bathroom floor and then minutes later, 2. Put me instantly into “action mode”. And I didn’t stop for 2 years…not allowing myself to think beyond the now, stopping the tears each time they threatened, and literally talking myself out of any self-pity…and then it hit. The deep grieving came almost out of nowhere. I kept asking myself, why now? This is nothing new. And look at all the amazing gains he has made since receiving his diagnosis. It is when I think about the future, beyond the immediate…the real future; 5, 10, 20 years, or his life after I’m gone. That’s when I feel most broken. Terrifying really. That is why I don’t and can’t go there often.
Always, for me, the diagnosis was a confirmation of what we already knew in our hearts and a gateway to services. Only a word. A tool for my child to get the help and support he so desperately needed. My son was still who he was and will be who he will be, perfect, beautiful, joyful, and the center of my world.

I remember my sister-in-law who is a speech pathologist sitting down with us when Kylie was 3 and saying “I don’t want you to take this the wrong way but I think you need to have her evaluated.” Evaluated for what? She has odd behaviors for sure but that’s just who she is. She flaps her arms when she’s happy or excited and makes high pitched squeals. She puts everything in her mouth including handfuls of dirt but- Autism? She talks, not to me but she talks. She repeats things and memorises things. I started the onslaught of internet research. I read about children just like her and then I sat alone on the end of my bed and cried for hours. I still cry from time to time.

I remember, it was the day after my b-day and I cried not because I didn’t want the diagnosis but because it meant he’d get the services he needed. I wasn’t prepared for the official report where in black and white it read severe autism. That broke my heart and I couldn’t talk about that for a while. I do think they will change it but only slightly. He’s beginning to talk and had pretend play. He’s behind but he’s making progress. In the parent report for the IEP we made it clear we expect him to go to college. Everything we do now is to ensure he can accomplish his dreams.

For me the diagnosis was a relief from the years of fighting for My David. I knew when My David was a year old that he wasn’t the same as my chatter box ham of a girl. He was 6 before I could get them to do the testing for Autism and it takes a whole panel of people to get the official diagnosis. I’m still learning what it means for my family, but I have no doubt that My David will always be what he is meant to be a happy, loving, artistic, brilliant boy.

Well, you know this makes me feel better. I never took my son for evaluation, even though it was recommended by his ABA. Our point was, if the evaluation comes back as autism, what do we do differently. ABA’s response? Nothing. That is it. Nothing, we were doing all we could at that point. Covered or not by insurance (so thankful that ABA is now covered in our state, but it wasn’t then). Wasn’t like we couldn’t go back and get a diagnosis if needed for services, etc. I didn’t want the label, they are so easy to paste on, but they never come off. I didn’t want anyone to expect less of him or tolerate more, just because of a label, I didn’t expect less of him, just figured it was going to take him longer and he would have to work harder than most. Now, I feel guilty… I can’t go back and get a diagnosis, yet I feel I have done a disservice to all of those with autism. To show a different flavor of autism, because as you say.. if you have met one child with autism, well, you have met one child with autism. Anyway.. thanks for that. But yes I remember that day well.

I must thank you, Jess. I just came across this post via your Welcome to the Club post link on Autism Speaks and have just been a crying mess since. You have put all my feelings into words and it’s comforting to know that I am not alone. So thank you from the bottom of my heart. Your description of what you went through upon getting a diagnosis, sounds exactly like mine. I couldn’t say the word Autism, or even write it. I would refer to it as the “A” word. I was scared to death. I was overwhelmed and so sad because I didn’t know what this diagnosis meant. I wanted someone to guarantee me that with lots of hard work and therapy, my son would be just fine. Maybe he would struggle…but all in all, he would be fine. I wanted to know he would be able to speak. I wanted to hear his voice other than just screeching. That was a year and a half ago. He’s speaking now….making sentences. We still have a long way to go, but I am so hopeful, I’ve accepted this journey and I’m a such a better, more loving, patient and kind person because of my son’s diagnosis. I enjoy and revel in the little joys of life. Things I’ve never done before. I never thought that a 4 year old could teach me so much about life, like my son. I know one day I will hear the words, “I love you.” And I’m sure I will be bawling like a baby on that day, too. Thank you again. You have an amazing family and you are one hell of a mom!!!

Two years later and I too see my daughter as the same girli she was always meant to be…Cali. Thank you for adding to the hope I already cling to. Your writing has touched my heart. Excited to have found your blog and excited to read more!!

Jess you have woven a cobweb and lured us as parents of autistic children.So we are not alone.We can’t get out also.We revolve around you like the solar system.Words flow out of your mind to solace and keep doing it in the future.The numbers are growing you see.

My grandson whom I adore, is newly diagnosed (4days), I have worked with special needs for 11yrs. And have always loved my job, but seeing it, living with it, and my 22 yr old daughter daughter having to deal with it, breaks my heart for them. Our D-day was something we kinda knew also, I had prepared her for a while now. He was dx with ASD, possible Apraxia. Finding this post & book Jess, is a blessing thank you! I/we needed this! (still healing?/denial too!)

Thank you for this post. We are weeks away from our first screening/evaluation. I have pushed so hard to get to this point so that we can get the services we need… but there is still a part of me deep down that really doesn’t want to know the answer. I keep reminding myself that it doesn’t change anything, our daughter is who she is and will be who she’ll be, but what a great reminder in your writing.

You were right, Jess. I’m not alone… I just read “welcome to the club”, then this… our kids may span the spectrum, but, our stories are all basically the same. I’ve been a crying cra-cra momma today – because of you and your followers who I can totally identify with. I pray for all these parents and give virtual hugs. While we don’t yet have an official diagnosis, we have had the preliminary and have been put on the waiting list for further testing (10 month wait here in central NC). Blessings!

Everyone asked why I did not flinch or fall apart the day my son was diagnosed. I could not. You said it rightly – it could be called anything but I knew I would walk out of the doctor’s office with the same beloved boy I walked in with. The only thing that changed was that now I would be able to access the tools to let him be the best Jacob he could possibly be.

I’ve watched parents get told their child has cancer and worse. I’ve watched those I love be stolen from me by cruel, vicious diseases. Autism? SPD? We’ve got this. We’ve so got this, even when it looks like we dont.

As an aside, I have cried over the frustrations and sorrows that come inherant to dealing with special needs. I am not calloused nor am I superwoman😉 Just clarifying that point.

You are welcome! Writers connect to great writing and when that writing shines light on a truth I’ve lived, I know that’s a connection that must be made.
You have a new reader, and I am passing your blog along to my circle of Moms!

Thank you, I feel so much better. My first sons dx. March 2013, and my other sons dx was in May. Im still having a hard time understanding everything, what to do? Where to start? My mind is racing all the time. Thank you, just by reading what you went through helps me understand. It will be okay.

Dear Jess, Call me anything you choose and I will get it😦 I have no other way of knowing how to reach you in semi-private ? even though this is not private at all but FB is just for all to see that know me , I am actually going to beg for your help?😦 I actually just have basic questions about autism and you most likely have the answers through out your blog. I am a Grandma whos hands are completely ties even though I have my Grandson pretty much 7/24 , I love him with all my heart but I am losing my mind and I just cannot for his sake and also the rest of my families sake. If at all possible can you email me in private , I respect and know you are only one person and you most likely have ZERO time to do this😦 each day gets so harder , my grandson just had a melt down as I was dropping him off , he clearly did not want to go into the lil education class😦 but as all in my small town are staring at me and he is desperately needed me to hear him😦 which I do loud and clear but the teacher took him away😦 I do not know what to do ?? I knew his little brain was zapping him like crazy over a arm rest in the car , I heard him , he just kept repeating through his melt down , I fix it , I fix it , I would have let him , the teacher took him😦 I am just stricken ed with what to do ??😦 Thank you for all you do for this whole world and this world of Autism

Yes. I remember vividly feeling like I had been punched in the stomach. In front of an entire IEP team because the psychologist had given the school the diagnosis of asperger’s but hadn’t bothered to inform me. It must have shown on my face because of the instant pity and dismay on the faces of everyone. Not my boy! And I also remember when I realized that the label doesn’t change anything but it just gave us a template to use, a plan to follow. You said it beautifully.

My son was diagnosed as ADD/ADHD (mixed type) at age 6. At age 10 I was convinced we were missing something, and went looking for another diagnosis. High-functioning ASD. A possibility I had been rejecting for years but now welcomed because yes, it gave me the key to ensure he got the support he needs to be the best he can be. And that best is AWESOME!

I am still waiting for our D day. All of our friends and family tell me that I am crazy, nothing is wrong, she is just a rambunctious 3.5 year old. I hear on a daily basis it’s my lack of discipline, we give in to her too much, we aren’t consistent, we just aren’t meeting her activity requirements and need to do more with her.
So for me, God forgive me, D day will be a relief! I don’t want my child to be anything less than perfect but, I can’t hide behind MY supposed or actual short comings as a parent, I need to get my answers to do what is best for my daughter.
I really wish that people would stop having ant opinion on our situation! Sure she behaves fairly well for the 3 hours or even 8 hours they spend with her a few times a month…..it’s a treat, it’s different, she isn’t home, I am with her 24 hours a day! I can’t threaten to send her home if she doesn’t behave. I can’t tell her we won’t go on adventures together if she doesn’t listen……I don’t have the luxury of sending her somewhere or of telling her we can’t hang out again for a while! Others get the fun parts I am dealing with the everyday life of her challenges….I deal with the screaming, the tantrums, the throwing, the hours of pretending to be a dog….the running the constant running and being ignored, by my daughter and everyone else! She isn’t the only one who won’t listen….most everyone else doesn’t either…..they just don’t hear that there is a problem with her, they hear it’s a problem with me…I don’t know how to parent!
So for me D day can’t come fast enough….I need answers, I need tools to help my daughter, I need to be told I am not a bad parent, I need solutions and most importantly I need support.

I found your page by happenstance (a FB friend liked a post you made about a recent restaurant experience). I have been reading and reading and reading more on the topic of autism, I am on information overload, and this is why: I asked my 3 year old daughter’s pediatrician to refer us to a behavioral specialist to help us work with her anxieties and fine motor/developmental delays.

The background is, at about 8 weeks my daughter’s pediatrician diagnosed her with “failure to thrive.” Apparently, she wasn’t growing like the charts said she should be. It was a LONG road of tests and evaluations, but we were ultimately brought to the diagnosis of AAT(alpha-1-antitrypsin) deficiency. One of the symptoms of that, the 1st one the doctors picked up on, was the bodys difficulty with utilizing the nutrients she takes in causing her to grow at a slower rate than most (although she is on the charts). It took her a little longer to walk (15 months). She has more of a struggle with skills like climbing and using utensils and crayons. Her blood levels have to be monitored regularly because her liver enzymes are elevated which can ultimately cause liver damage. This constant monitoring and poking and proding necessary to monitor her levels has also caused or brought to light her anxieties (especially in any envirinment that even remotely resembles a medical facility ie. our dogs vet, groomer, even parking garages, hospital’s have parking garages). From 2 months old my daughter would SCREAM, not cry, literally SCREAM!!!! from the time a nurse would call us from the waiting room until the visit is complete and we are exiting the waiting room area. I also discovered it was easier for all of us, if I scedule our dogs appointments when my husband is off and one of us can take the dog and one of us can remain home with our daughter. Places like that would bring out the same shrill SCREAMING!!! that her actual doctor’s visits would bring.

Early on, I began to notice other anxieties or situations that would make her struggle. Being in a crowd (church, a gymnasium etc.), the wind would make her gasp and flail and cry, certain noises (lawn mowers, weed wackers, blenders, vaccums, helicopters, motor cycles, and big trucks). As an infant these things would make her react, every time, like she was in pain. To others, it would seem unreasonable that such “trivial” things should bother her so extremely. They would say things like, “she is just going to have to learn to deal with it.” There were even times her father and I (God forgive us) shared this way of thinking. The “tough love” mentality. The more time went on and the more she learned to express herself with words, the more I began to see that these situations are very different from her perspective than from ours. We are not in her skin, we can’t know what it’s like from her perspective, but she is not “making this up for attention” or to “get her way”. I began to realize, she is in pain! This is what prompted me to seek the counsel of her pediatrician and ask for a referral to a pediatric behavioral specialist. Like any parent, I hate seeing my daughter in pain. I see so much strength in her. So much courage. I admire her and I’m in awe of her. I get the benefit of seeing the whole picture of her, not just the glimpses of temporary melt downs she may have in public when she’s in pain.

We had our intial appointment for evaluation with the behavioral specialist. Our daughter was visably anxious, but she made it through the entire appointment and there was no screaming, no melt downs of any kind. That was HUGE! I watched as she even took the Dr’s hand going down the hall to choose more toys to interact with. That was FREAKING HUGE! I thought it all went so well, and we decided to begin occupational and speech therapy. The OT for the fine motor skills and physical developmental delays and the ST to develop in the Dr’s terms, “more meaningful speech.” I felt a pull in my heart, “what???” “what do you mean her speech is not meaningful???” Then came the words you describe above as D-DAY, “I believe your daughter may suffer from autism spectrum disorder.” WAIT WHAT??? There is NO way!!! My husband and I talked about it at length. We asked our parents, our closest friends (some of which happen to be Drs) we all agree, “our daughter does not have autism.” We examined the literature the Dr gave us and the checklists she gave us listing signs/symptoms. For each one we could say is true there were 8 or 9 that we can’t say is true. She is very affectionate and social with those she is comfortable with. She initiates conversation. She looks you in the eye when you speak to her. The spectrum seems to darned wide. I would not let the Dr write that diagnosis on her chart at that initial appointment. I couldn’t. I am still not convinced. If they are going to assign that label to her my husband and I have to be convinced. Yet, I read these words from your post and I just want to be sure. How were you sure?

“If you’ve gotten to the point of having your child (or yourself) evaluated, there’s a reason. You might not be willing to face what that reason might be yet, but it’s there. Mine sure was, stimming softly in the corner, searching for cobwebs.

Autism is a word. And a word does not – can not – define nor predetermine a life, nor should anyone ever give it the power to limit one.”

Please tell me how I can be sure. I only want her to be treated based on what is true. I am praying for clarity for us and for all the medical Drs and staff that work with us. Which brings me to the next sentence you wrote above that really spoke to me”

“I don’t really give a crap what you call it, Dreamy. Call it Henry for all I care. I’m still going to call my precious girl Brooke when we go home tonight.”

That’s it in a nutshell for me. My daughter is who she is. No matter what the Drs choose to call her struggles she is still “Brooke” to me. The thoughtful, affectionate, super loving, super intelligent, bright as a sunbeam, music loving little ray of sunshine we call “Grace.”

I’m about two months out from the day. I don’t actually remember the specific date, but I know it was the best day of my life. Because of what you said above; because I finally am getting the help I need so that my girl can be the best possible version of herself.

Thank you for being this staunch advocate for all of our kids. You’re amazing and wonderful.